Hi - just to say appointment this evening didn’t happen. He never called. Wish I was surprised. His secretary is beyond a joke. Too upset right now to think about what to do tomorrow. Husband is going to take over the logistics of EVER getting this sorted because I have just had it now. Every single appointment has been a fight and a battle. Sitting here with all my notes ready to go, all proud of myself for managing to keep positive today and looking forward to hearing what he had to say and whatever the next steps may be. Feel absolutely broken
Awk pet. Thats absolutely frippin rubbish. You have been so strong so far just hang in on in there a bit longer. Get hubby on the phont tomorrow and read the riot act. The difference between neuros/health boards is bewildering and so frustrating that they treat this stuff as routine. Sending you hugs. Alcohol is acceptable on a Monday in sych cases x
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That is incredibly bad. I’m sure you said but this particular appointment is private isn’t it? I am so gutted for you that clearly the appointment wasn’t booked correctly by the secretary…it just seems so negligent and it has to be a mistake!
I wish I could say to you that it is out of the ordinary but having been employed in this system for 17 years I know that when it screws up it is so needless yet the impact on patients is huge. I don’t even know if i’m allowed to ask which region you are in?
Look speaking really honestly I think i’d get out of the private service as soon as you get your LP results. It hasn’t been any better than the NHS and all they’ve done is listen a little bit better, get another MRI and then order a LP. Yes they’ve gone that bit further than Neuro #1 but the treatment/care on the day of the Lumbar was abysmal IMHO.
If I can put your mind at rest somewhat about what happens afterwards. I’m around 4 weeks diagnosed and this is what has happened so far: I haven’t yet spoken to the designated MS nurse (normal apparently), I’ve got an MS Neuro appointment for the end of September, and my G.P. has called me once. “Treatment” or drug options is going to be on a distant horizon. And we are teetering on the edge of more Covid crisis as the infection rate rises daily. So what i’m trying to say is, once you get your result, if it’s positive, nothing massive might happen so try not to feel panicky about that.
Did you join the Facebook group? It is extremely active and there will be no shortage of people on there with way better advice than me. Knowledge too.xx
Thank you - all good advice. It’s interesting how long it takes after diagnosis to get up and running with treatment. Dreading another wave of COVID slowing everything down again.
Had a look at the FB group but haven’t joined yet. Was waiting for my appointment as for some reason, not sure why, the questions they ask you when you go to join the group put me off as without a diagnosis I wasn’t really sure how to answer them. Will look at it again soon though xx